The Autism Centre for Education and Research blog

Interview with Kabie Brook

Kabie Brook is an Autistic activist and campaigner and co-founder and chairperson of Autism Rights Group Highlands (ARGH). Kabie sits on the Scottish Strategy for Autism Governance Group and is a community Advisor for Police Scotland, ASK (Autistic Space Kit app) and has helped develop materials for the National Autistic Society (NAS). In 2014, she won an ‘Autism Champion’ award from Autism Network Scotland for her education and advocacy work.

Tell me a little about ARGH and the sort of work done by the organisation.

We are an Autistic People’s Organisation, completely run and controlled by Autistic people. Our membership is quite diverse including in age: we have members from 18 to 80. Primarily we are concerned with improving services for Autistic people both locally and nationally, educating about Autistic strengths and reducing stigma. We do this through education: training and written materials, events with Autistic speakers, lobbying, campaigning, and by working with others such as by being part of the Autism Strategy Governance Group.

The Autism Alert Card produced by ARGH is an aid to communication, to help both the person using it and whoever is presented with it.

We wanted people to be able to see professional Autistic people speaking with authority on autism, not just as Autistic people but as valued individuals in their chosen field of expertise. We wanted to challenge the idea that Autistic people can only speak about their own personal experience and that ‘experts’ in autism who speak about us have some sort of superior knowledge that we can never match. The conference was aimed at non-autistic professionals and parents but also at Autistic people: there aren’t always the chances for our community to see other Autistic people as successful, open Autistic adults and we want to change that.

I think it was extremely successful, it was very well attended: around 150 people from across the UK came along and the feedback clearly showed that the speakers and the content of the presentations had a positive and lasting impact on the audience.

During the recent World Autism Awareness Day (WAAD), I noticed that through your comments online, you phrased it as World Autism Acceptance Day. Why is that and do you think that the concept of ‘awareness’ is problematic?

World Autism Awareness Day is heavily based on the medical model of disability; it’s more about us than for us and often carries themes of overt charity model thinking: pity, helplessness, hopelessness and even cure.It can be a very sad time for Autistic people, a time when we are reminded that many in society reject our way of being and see us as a burden.

Autism Acceptance Day was created by the international Autistic community as a remedy to this, as a chance to think about how we can move forward from awareness to acceptance – something that would truly change lives.

I was also very struck by the photos of the bridge over the river Ness (in Inverness) on WAAD which showed it lit up in a range of colours. What was the purpose of this and was it difficult to get the local council to agree to do it?

Last year we spent quite a lot of energy explaining why World Autism Awareness Day can be a negative experience for Autistic people and that using a colour associated with one particular organisation – in that case blue, isn’t a great idea. This year we decided that what was really needed was something positive, something to make people smile. Looking at the bridge made people feel happy. We asked for it to be lit that way to celebrate Autism Acceptance Day and also to celebrate neurodiversity: as an inclusive celebration and a positive affirmation of who we are and how we DO fit into and have our part in the wider community: themes of inclusion are very important to us.

The bridge over the River Ness is lit up to mark Autism Acceptance Day, 2015.

It was actually amazingly easy, the council said “yes” right away. I think this was because of the positivity; it’s a fun and loving thing, not linked to any one organisation. We’ve had positive messages from around the world, people loved it, hopefully we’ll see more and more next year.

It’s noticeable that there is much more discussion these days about autism diagnosis and girls/women. Do you think that there is ‘an issue’ as such?

There is absolutely an issue. In part I think it has to do with the stereotypes of what autism is, that it can be hard to get a referral for assessment or for anyone to even think about autism if they’re not looking at a very stereotypical male in front of them. To me it’s also significant that many clinicians rarely see real Autistic people outside of clinic, as equals, as friends, and most don’t share our neurology, this means that the subtleties of our real lives are missed. I don’t think it’s just an issue for women and girls though and I certainly don’t think we should be considering different criteria based on gender – and absolutely not based on the ideas of gender binary. So many men are misdiagnosed or missed too and people who don’t fit the gender stereotypes in other ways have no chance. We need a conversation across communities and across disciplines to educate and try to move towards a more inclusive and more accurate way of diagnosis assessment and getting that initial referral.

The idea that we are often used to legitimise or prop up failing or inappropriate systems. That we are often recruited by charities as symbols of pity or inspirational success stories that show what can be done if we are helped by well-meaning others. Or maybe we’re being used as tokenistic appointees to groups or public bodies, we allow them to tick a box and publicise their inclusion policy, but in reality we are silenced and chosen as representatives by them, not by our own community. It’s time to recognise the power in self direction and Autistic community organisation.

A publication from Elkie Kammer, who is a member of ARGH.

Significant improvements are needed in the context of autism in terms of support and understanding, for example, but have there been any areas of progress over recent years, as far as you are concerned?

I want to finish positively but you’re right, the amount of understanding and support is woeful; access to education, healthcare, housing, assistive communication technology and everything that’s needed to create equality in our society is lacking. For some, things have improved a little but for many, things are well below what I would see as a basic standard.

I have definitely seen more willingness to engage Autistic people in conversations about autism, particularly in Scotland where I feel we’re a little ahead of the rest of the UK. However the tokenistic approach is still rife.

The Autistic community also needs to make more effort with including all types of Autistic people, not just the highly verbal, white, easy to engage. To be successful we also need to embrace our allies and learn to encourage our young people to speak up. Really there’s so much to do, we have so far to go.

Thank you for agreeing to this interview, Kabie.

Kabie writes: ARGH’s next event will be a celebration for Autistic Pride Day in June, an outdoor community event to celebrate together with talks, craft tables and information stands. It will be in one of our local parks 🙂